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Saturday, April 20, 2013

If you are a parent you probably know how profoundly this thing we call love for our children also spells constant worry, guilt, fear, feelings of inadequacy, and holds close to its very core the terrifying potential for bottomless grief.

While parenting might mean eskimo kisses and early morning warm cuddles, drawings on the fridge, tiny participation awards on the mantle, soft sobs that only your arms can make disappear, intense pride and joy, laughter that plays a never-before-played chord, and boogers that kind of look like a dog (and that don't really gross you out), there are also desperate nightmares about college funds, meaningful time, birthday invitations and popularity, happiness, correct nutrition, homework, following dreams and what those dreams might turn out to be, scraped knees and elbows that could have been so much worse, turning out 'well', and much more, that often, especially late at night, can seem almost overwhelming.

But your laundry list of concerns that keep you up at night probably does not include the worry that your child will not be seen as fully human by their peers and by the society they are growing up in.

Unless your child is also part of a population that is marginalized and that there are widespread, so deeply ingrained and accepted prejudices about, that more often than not they're regarded as opinions, sometimes even as the truth. As evidenced by the comments to this post, which the person who runs this blog calls "opinions" and "valid discussion".

My child is often marginalized and dehumanized.

How does a person exist in a society as fully human, and as an equal when they are constantly told by everyone, even their own community, that they are part of a marginalized, yet homogeneous group, a group of which blanket statements and assumptions can be made and spread as expertise?

Would that situation frighten you?

It frightens me.

The world at large seeing my child as somehow too different, defective, or less than keeps me up at night. It takes me away from my family in my need for tangible change while I read yet another article on Robert Ethan Saylor and plot a better tomorrow for everyone.

But that fear of her being taken away from me is never far either. After all, we've been close to that edge once already. That fear becomes even more pronounced, at times overriding the fear of my child not being seen as fully human, especially when something like what happened to Ethan happens.

A whole community of parents, loved ones, and people with Down syndrome is shaken. Shaken to the point where many feel like something needs to be done, this mother included.

So I understand the need to grab hold of anything that somehow seems like a solution. A powerful 'if only'. Something that just might tell a terrified parent that what happened to Ethan was an isolated incident and the result of something that is amiss, but that can be easily rectified.

'Down syndrome specific training' is born.

I applaud the community for attempting, for once, to come together to address this situation. I admire anyone's fierce passion for their children, I have much in store for mine. I understand the need to make everything better, to have a goal, and to make something positive came out of a horrifying sequence of events that never should have unfolded to begin with and that continue to haunt us because in lieu of an independent investigation there has only been an internal investigation. The need to make sure Ethan's death is not in vain resonates with me. I could never disagree with a parent's love for their child and their need for safety and security for that child.

But I have to look at the bigger picture. I have to look at the repercussions of the public discourse on Down syndrome specifically and intellectual and developmental disabilities more broadly. I have to look at this training, something I normally see as a positive, as education, within the scope of the constraining and limiting 'Down syndrome specific' epithet. I have to plot in how exclusion and separation from the general population by recommendations, protocol, or legislation will affect what I wish for my daughter and all people with Down syndrome - inclusion, acceptance and equality. I need to understand what happens to prejudices and stigma, while education and training on such, in reality truly specific subjects, as 'delays in processing' or 'heart conditions' are brought under the Down syndrome condition umbrella. I need to assess how detrimental such notion as having a "Down syndrome specific interaction" or addressing "specific health and behavioral concerns associated with people with Down syndrome" will be to perceptions of others regarding the individuality of a person with Down syndrome.

I need to be true to my heart and the one who calls me mom.

Exclusion by way of creating a standard that is separate for those with Down syndrome, if that were even possible for such a diverse population, is not the kind of legacy I wish to create for my daughter, or anyone with Down syndrome. I wish to create a legacy that challenges bias, stigma, and prejudice, and that celebrates diversity while understanding that Down syndrome in itself is not diversity but that diversity is born from individuality.

The only Down syndrome specific training that I can support is training that completely challenges the existence of anything 'Down syndrome specific' and focuses on people with Down syndrome as people, as individuals, as equal members of society with equal rights. That training I will champion.

Tuesday, April 2, 2013

I don't want to write about how he cried for his mother right before he died. I don't want to write about how the people whose actions left him dead are already back at work protecting others, or selling another ticket to a movie, or looking back at that night when a life was lost while they did nothing because someone qualified was taking care of it, or because they were afraid ...of him? I don't want to write about how confused, biased, and embarrassingly void of thought, real research, and understanding the media coverage concerning his death, and his life, has been. I don't want to write about the deafening silence from those who get a salary for representing Ethan and all people with Down syndrome (never again paid by my daughter), and then, too late, filling that empty air with even emptier words. I don't want to write about agendas or people who can't come together even in death, and who bicker, or try to one-up each other in some strange game of 'Whose cause is this?', or people who look at their own child with Down syndrome and still see other, or people who don't see a problem with a police department investigating its own employees. I don't want to write about people who hide behind the anonymity of the internet to spew their venom on 'retards', unsuspecting parents, and at anyone who reads the comment section in a newspaper (you are scum and I feel sorry for you). I refuse to write just because if I don't, the Department of Justice might just think that this horror, this violation of basic human rights, this dismissal of 6 million people has blown over, because there have been some vague promises of 'training' for people, who are supposed to be protecting my daughter as an individual, on how to see her and the other 6 million exactly like her even more differently, as strangers in their own homes, as beings beyond comprehension by the simple power of common sense.

I don't want to. Ethan isn't the cause of this. He isn't to blame. Neither is his Down syndrome. The blame belongs on the shoulders of those whose actions led to Ethan suffocating to death, and on a society in which a person's life is instantly deemed to be of lesser value, less worth saving, dismissible, or to have a potentially dangerous, out-of-control component, when his assumed IQ score is below 70.

Society needs fixing. Those of you who look at Ethan or my kid and don't see a person, an equal, need fixing. Adjustment. Change. You don't get to judge my daughter, I get to judge you.

Successful communication is not an effortless task. Communication takes practice, patience, compassion, and a willingness to listen and to try to understand. Communication takes years and years to learn and even then, in any given situation, at any given time, communication might fail. Even with the best of intentions on all sides.

But what if the intention, the willingness to understand, is not there? What if, instead of seeing and listening to a person trying to communicate with you, all you see is a stereotype?

He isn't small? He isn't cute? He's not smiling either? There's no belly laugh. He's not happy. He's not contained. Where is his keeper? Why is he by himself? Who let him out? He's reacting. He won't understand anything but force. Not fit to be out in public. Those can't be words. They don't understand. They don't think. Did he just say 'mom'? Nah. Couldn't have. Retard strength. Better watch out.

But what if you grew up having a friend who had Down syndrome? A student in your class? What if the lady who sells you your weekly lottery ticket and you regularly chat to had Down syndrome? What about a coworker, your boss? What if a kid in your daughter's soccer team had Down syndrome, in your son's ballet class, a guy in your aunt's book club, that lady who golfs with your sister-in-law?What if your favorite television show had a character with Down syndrome? How about the bartender at your favorite Friday-night watering hole? What if you had that Friday-night beer sitting by your friend who has Down syndrome, listening to his woman troubles or work stories, and telling him about this weird mole on your back, or how you think your car might not need all of those repairs the shop's quoting you for? What if we valued everyone, included everyone, and then let the chips fall where they may? What if we didn't assume anything, but looked at everyone as an individual?

What if people with Down syndrome really were included in every aspect of society? What if we all made an effort to understand, to communicate?

Simplistic? Maybe. A real choice? Yes.

Include. Interact. Accept. Embrace. All four are choices you can make. Today.

About Me

A child of a global world, originally from the land of Santa and cell phones, married to a bona fide viking, and attempting to raise a loud little life who has Down syndrome, all the while getting used to the US Pacific Northwest after many years in Latin America and Africa. Against all odds the kid's first words turned out to be 'mom' and 'book' instead of 'fuck' and 'no'. That may well turn out to have been my finest parenting moment ever.